Confessions of a Special Needs Parent
Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and happy.
Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.
Scary right.
You aren’t a doctor. Or a therapist or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids…you have no idea what you are doing. But yet, you are entrusted to raise this tiny little VULNERABLE human.
At first you don’t want to acknowledge it. Then, you don’t want to believe it. And once you get over that hurdle you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.
Parent Shaming
You turn to your spouse. Your family. Your friends. Whomever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgement. Doubt. They don’t relate. They don’t understand.
You try in the break room with co-workers. You try to vent during happy hour. But it never seems right. The looks make you feel shameful. No one gets it.
So, you stop talking. You silence yourself. You start to wonder if you are complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.
You start to doubt everything.
From that moment forward you struggle silently. You keep your mouth shut.
When you do mention any of your struggles you feel the need to put…’but I love my child’…in every sentence.
I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in retaliation, I asked special needs parents to confide in me. I asked for their secrets. Their confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. I also want to shed a little light on what it is like to live in a day in our life.
On your darkest days I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.
Go easy on yourself. Feel every feeling. Be upset. Be sad. This life is hard. And then learn to laugh. Because that’s the only damn thing that will get you through.
I promise you with every ounce of my heart that you are going to survive this.
225 of you sent me confessions. These are my favorite.
My Favorites
”I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live everyday isn’t always beautiful.”
“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”
“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”
“I’m addicted to over the counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”
“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”
“I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”
“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”
“It’s all my fault. #AUTISM”
“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”
“I know in a weird way I should be thankful that my son is so severe that he won’t know he is different. He won’t know he is being bullied. And in a way it provides me comfort. But in a way it crushes me even more. My son doesn’t have any idea what is happening around him. How can I live with that?”
“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”
“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said “but that’s just hard on you because you have to do a lot for him…would you change anything about him?” And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!”
“Some of the sounds my son makes actually haunt me. I have to wear head phones at times.”
Confessions On Parenting
“I have resentment towards my child.”
“Sometimes the pain makes it hard for me to even look at my daughter.”
“I relive my pregnancies trying to figure out what I did wrong.”
“I always tell my son he can do anything, that we can do anything. Sometimes I’m actually not sure if he can but we keep trying anyway. (he has proven me wrong many times)”
“I have a “sad” moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”
“I am jealous of parents that have kids that aren’t severe. First I was jealous of parents with normal kids. NOW I’m jealous of autistic kids that talk.”
“I’m cheating my other children.”
“Sometimes I put him in his room for an hour with the tablet and just cry by myself while I clean up the terrible messes he makes at home. I know he’s safe and I have a second to myself to just have a pity party. It’s terribly lonely. Even though my husband understands, he doesn’t truly get it. I have to worry about all the quirks, preferences, schedules, and everything else. It’s very weighing! And as much as parents to typical children say they understand and support me, it doesn’t really help. There’s no end!”
“I hate when my son doesn’t have services because I have to deal with his behavior for the whole day.”
“I see no future for my child and it breaks my heart daily.”
“I love my child but there are days when I really don’t like him.”
“I’m tired of all the damn therapy. I don’t know if it’s working. I think we should give up but society won’t allow it. So, we keep doing it. And there is never a break.”
“Its hard for me to reach out because feel like I won’t be accepted because my son is high functioning. I feel shunned like people won’t think I can relate because my sons disability isn’t as obvious as others. But the older he gets the more his differences are obvious to everyone around. I get “he doesn’t look like he has autism” or “he will outgrow it” and it’s frustrating explaining things because it’s not visible.”
“I let my NT 3 year old have a NUK and sleep in my bed because I have so much guilt.”
“I feel like I’m never enough. I can’t do it all but I pretend I can and it’s exhausting.”
“I spend days wondering if I can handle having this child with me until I die. I don’t think I can.”
“I am a failure because this is so much bigger than me. And I am not strong enough.”
“My kid deserves a way better parent. I do everything I can and it’s never enough. He always needs more. I have nothing left to give.”
Confessions On Marriage
“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”
“I am jealous of my kids dad. He spends his time with our two younger children while I am forced to miss every event because of our autistic daughter. It’s not fair.”
“I know my marriage will not survive this.”
“I hate my husband. He helps with our son but he doesn’t help me emotionally. And that’s almost worse.”
“Autism destroyed my marriage. Now I am divorced. And I know I will never meet anyone because of my son. I tried dating and the men couldn’t handle it. I am going to be alone for the rest of my life. Wait, that’s wrong. I’ll have my son.”
“I am never going to stop grieving and my husband hates me for that. And I hate him in return. I don’t understand why his heart isn’t broken.”
“I think my wife is autistic too. I am surrounded by loneliness.”
Confessions On Life
“I give up almost everyday. Actually that’s a lie I give up everyday! Sometimes as soon as I wake up.”
“I fear I won’t survive this.”
“I just gave myself the nickname….crybaby quitter.”
“I feel like I fail in every other area of my life (marriage, home, friendships, other children etc) in an attempt to parent my ASD kiddo.”
“I feel hatred and jealousy towards women who have a bunch of kids (4plus) and there all typical … I only have 2 and ones autistic . I know its terrible but it makes me sad and resentful. Always makes me wonder why my son and not theirs.”
“I killed myself as a single, working mom to get degrees to take care of them without help only to have my child with autism take away my career and I love him but I am mad at him for it.”
“I avoid taking my son to peoples houses. Not because of how hard it is in me. I wish. I’m embarrassed, and so sick of having to try to rationalize things. He pooped on my friends floor once because he didn’t like their toilet. He chews up their stuff. Drops expensive things. They don’t understand autism and I feel judged and so embarrassed.”
“I am a preschool teacher and it’s so very hard because I see what your “neuro-typical” children can do and I feel such a huge amount of resentment and wishes of my own daughter being able to do the same things I teach every day–writing your name, etc etc.”
“In the past I have contemplated suicide.”
“I see and know mother’s who drank and did drugs while they were pregnant and their kids are normal. It makes me crazy. I hate them for it.”
“I secretly cry every day. My husband has no idea. He thinks I’m taking a bath over doing laundry.”
“I lost my relationship with God because of this.”
“Every day is exactly the same. There are so few moments of sunshine that I can’t stand it. I need it to get easier.”
“I have a co-worker who does nothing but brag about her niece who is the same age as my daughter (5) and how she’s reading, does this and that, basically the sun shines on her ass and she’s perfect in every way. I get so heartbroken by her bragging, inside I’m dying a little bit each time and I just have these feelings of “I wish my daughter could do that.”
“Sometimes I just sit and cry because I don’t know what to do.”
“The weight of the guilt is more than I can handle.”
“My youngest has severe, nonverbal autism. My confession? Some days I am just tired of changing diapers, giving him a shower, brushing his teeth, clipping his nails, shaving his face. I’m tired of getting him dressed, tying his shoes, cutting his food into bite sized pieces. Tired of monitoring his screen time. Tired of the stimming. Tired of not being able to just run to the store when we run out of milk. Tired of not being able to stop for dinner on the way home from our other sons’ games – tired of it always being the McDonald’s drive thru and always having to tear chicken nuggets into four pieces before handing him a bag of fries and chicken pieces- half of which will end up on the floor of the suburban. The thing is — feeling tired of these things– even though I’ve been doing it all for over 19 years now- brings me guilt. I have a handful of friends who have had to bury their children. There is no greater pain than that- and what they wouldn’t give to tend to their children rather than mourn them the rest of their days…So most days, I’m good. But some days, I’m not… and the guilt is stifling.”
On Family
“My parents told me my son is spoiled and just needs to be disciplined. They blamed me and my husband because of one overnight stay with them that was “full blown Autism.” March 7th will be one year since I’ve seen or spoken to them other than an email and one family gathering. I chose my son and husband.”
“Mine is a little different because I’m not technically his mom…Mine is I was done having babies 17 years ago and I shouldn’t have to be doing this. I absolutely loathe my daughter at times for not being a mother. I’m supposed to be the Grandma that spoils them and sends them home. Instead I’m feeling all of the same things as you … I wonder how long I can honestly care for him. He’s five now and I’m already exhausted, what happens when he’s 10 or 15, etc.”
“It drives me crazy when people complain to me about their kid talking too much. Do you know who you’re talking to?! I would give anything (ANYTHING!) to have me son talk my ear off!”
“I’m terrified that my husband’s parents are going to love the ‘other’ grandchildren more than my son.”
“I hate my parents and sister for not helping me. I hate listening to them talk about their ridiculous problems. If they only know that every day of my life is a war. And they don’t care to find out.”
“Before my daughter was diagnosed I was crying to my mom about how lost and heartbroken I was. She looked at me and started crying and told me ‘this was hard for her too and that she didn’t like to hear about it.’ That night I googled narcissistic personality disorder. I will never forgive her for not helping me more.’
“I have four siblings, three of which live with 10 minutes of me, and I wouldn’t trust any of them to care for our son should anything happen to us. We have a meeting with a financial planner next week, and I’m not looking forward to the conversation of who i would want to be the guardian. Can I say ‘none of them’?!”
“I hate my siblings for taking their kids for granted.”
On the Future
“Why me? Someone tell me…why me? What did I do wrong?”
“I am 5 months pregnant. I just found out I am having another boy. I am devastated because I know that autism happens less frequently in girls.”
“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”
“I hope my daughter never has to live without me, it may sound selfish, but I’d rather live with the heartache of losing her than not knowing if she is properly cared for and hurting and not able to express herself.”
“I grieve over the life I should’ve had.”
“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids. But the fear was too great.”
“I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a “normal” kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.
This is a glimpse into the private world of special needs parenting.
“How do we advocate for something we hate so much? I hate my son’s disability but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.”
A huge thank you to all the amazing parents that shared their thoughts with me for this post. You are helping so many.
We aren’t all that different from parent’s of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. Often it can be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
Learn more about guest posting on Finding Cooper’s Voice.
This is incredibly powerful. Thank you xx
I have been drinking my self to death for the last 10 years because I don’t want to be around when my daughter gets old, I know it selfish but it hurts so much to think about it that the faster I go the easier it will be,,,, I love her so god dam
much ….
My daughter is currently 7 and been in special needs classes and ABA pretty much the minute she was allowed. She currently stims and makes incomprehensible sounds when she communicates but she receives information well enough.
Yes, it sucks when you are around other kids who are normal and zooming pass milestones while your child seems to be going in reverse. All we can do is focus on ourselves and focus on what we can do and not worry about other people and their thoughts/opinions/children. Just know that there are parents like us out there who have the same struggle and lend strength to each other.
All my wife and I can do is love her and give her everything we can to develop her so she can have a chance to be independent one day. We realize it is a long journey which may not have the happiest of endings but we can only do our best as parents.
Having a beautiful daughter with autism has taught me a lot about myself and really developed my senses of empathy, toleration of others + their differences and especially humility.
We wish you all the best and if you truly are struggling to the point where it can be detrimental – please ask and find help.
I am 50 years old and no I don’t have autism. I do have DCD and dyscalculia. Along with dysgraphia. I received special education services from the time I started school in 1978. Until I graduated in 1991. I had IEP and was in regular classroom and taken out for LD services. Because of problems with my coordination I received physical therapy every Wednesday night. Your poor baby is suffering and so are you and your wife. My son Joshua was in 4th grade I couldn’t help him with math. I did graduate from high school. Whatever the future holds for your little girl.. it won’t be the one you wanted for her. But she can still be happy. Sending hugs to you and your wife. The last thing any special needs kid wants is to make you sad.
Thinking of suicide is a regular thing for me. My sleep is never restful I get woken up all hours of the night with noise non stop. I have a young baby I often have to make my autistic child sleep in my room so that he won’t awake the neighbors children, but it keeps me and the baby up. I want to lose weight I try to get on my bike but he’s worrisome the entire time so it makes me want to eat more I could work out while he’s in school but that’s when I sleep and do appointments for my other child.
I hate the life of mine that Autism has taken away.
I told my husband years ago, “I would rather die than be his caregiver for the rest of my life.” We are no longer together. He wants our son to stay in our home but I am the one doing most of everything. I gave up my career, job, identity and sanity…I am reclaiming it and providing myself with self care.
I want my son to have a job, live independently as he possibly can, I want him to have responsibilities that my other two NT children have. No one is emotionally nor physically equipped to be the sole caregiver for their child forever. I do not feel guilty stating I cannot care for him forever. I gave up the guilt years ago. I will NEVER stop being his mother but there will be a time where I do stop being his caregiver.
My 16 year old step son has lived with us since he was 8. We thought he was introverted and shy. He had suffered early childhood trauma while living with his mother also so we thought that could be at play as well. But the older he became the less age appropriate his behavior was. He was diagnosed with Aspergers/high functioning autism last year. He does not like me at all. Will not look at me or speak to me, unless he wants something. But only if his dad isn’t around. If I say something to him he will respond with one word or a guttural noise and walk off. He has literally said three word to me all summer. I have done everything to try to make up with him. He has never given me a chance. There is a lot of back history of course with his mother who is a drug addict and severely mentally ill telling him how horrible I am. I guess he believes only what she said and not his experience with me over the years. She completely abandoned him when he was 12. At the end of the day though I feel extremely disrespected and am worried I am going to completely freak out and divorce his dad just to get away from what seems like an impossible situation. I really feel like I cannot live with this situation any longer. I don’t know what to do. I tell his dad that it’s not okay that he treat me like this and there must be something we can do. I see him interact with his dad all the time. Once I asked him why he won’t talk to me and he said why should he have to interact with me he has only known me 6 years. At that point he had lived with us for 7 years and known me 9. Regardless how long I do not know what else to do.
Thank you for this text. It’s a pain killer.
‘It feels like a roller coaster’ – ? Oh no! A roller coaster seat has a safety belt and safety brackets and the carriot is guided by a strong rail.
But this life is without any safety measures. You have to find your own way to keep your seat.
This is the best thing I’ve read on the internet today..thank you..
Thank you for these very real sentiments. So honest. I am so glad to go to a place and see where some of the things I feel inside are expressed in writing. It’s almost therapeutic in a way. It is comforting to know I’m not going crazy caring for my own special needs child.
Those are some REAL words, as real s it gets. As both a disabled mom with a disabled kid, I’m completely silenced and isolated. At least my words are on this page. We have to let people speak their truth and not be afraid to hear them…but few, if any, will do so without judgement. I’m a former psych nurse and IMHO our culture has completely forgotten how to listen. We accept nothing but positivism.While it’s not healthy to be a chronic complainer either, there is a happy medium where people don’t have to feel utterly silenced in their struggle. Other cultures seem less focused on the “can do, will conquer” attitude Americans are saddled with.
Bravo to you for apologetically sharing all aspects of living with a disabled child…the good, the bad, and the ugly. I blogged for about two years, but people couldn’t handle the realness of our lives with a significantly disabled mom and a disabled child (different disabilities). Then I lost my faith in god and people *really* couldn’t handle that. I gave up blogging and now sit here in silence again. Yet I know through blogs like your own that I’m not alone. Thank your for that. <3
Oh my gosh!! This comment. God girl you are real. And that scares people. Can I share this comment on my Facebook page?
Go ahead and share away! Do change that word one word to “unapologetically” please, cuz I love how you don’t apologize for anything. You don’t have to and you shouldn’t have to. 🙂 Many hugs and much love to you, and to all others who refuse to be silenced.
oops…I meant to write “unapologetically sharing”!
I see my life in so many of the comments. Friends and family don’t understand – how could they? TAnd the grinding exhaustion day in and day out and the worrying about the future. And at the same time I feel like I don’t really deserve to complain, because with HFA I has it easier than many others.
I have NEVER understood how my family and my husband’s family didn’t try to help. Even having meals for us would have eased some burdens. How could my Mother remain in the background so much??? Why was her daily afternoon nap more important than her sweet daughter’s needs that she never asked for. My sister popped pills and ended up back home with my parents and her 2 kids. It’s been rough to say the very least.
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I am a parent..a father…I feel so guilty…I am….I cannot bear my pain for all of it..my wife just pushes the knife deeper in and she sincerely thinks she is helping me…lost in dispair after the diagnosis…I rejected Autism talking/reading for 1.5 years and now that I am up and ready to face I realize the genius therapists were fake..it it is too late…..looks like my kid is no enough young now..nothing will let me forgive myself for not being a proper father
I am so sorry you are struggling. How old is your son? It’s not too late.
I just want to say thank you for being so truthful. It’s been a long and lonely 12 years . I am all too often amazed when I get through another 24 hours. The isolation I feel has to be the worst of it.
TRUE, TRUE, TRUE.
And yet nonetheless it kills me to think of my son reading this. And it kills me as a neurodiverse person myself.
But as a mom, I have to totally agree on the exhaustion, the terror, the heartbreak, the grueling “changing of dreams,” the love that surpasses anything, the fear for the future, the isolation…
Thanks and love,
Full Spectrum Mama
I feel the same as Full Spectrum Mama. These comments are so real, and we do have these feelings, but I do cringe thinking about my daughter reading them one day. She is 10 and autistic (plus some other disabilities), and at age 3 I would have thought her incapable of understanding but now I think she might. At 3 she was non-verbal and now she is starting to talk in full sentences (sometimes).
It’s still hard though because autism does complicate things, and she has all this other stuff going on and the future is uncertain. As special needs parents we are judged by everyone, even other people in the autism community. We’re not allowed to voice our difficulties in any environment where our kids could one day see how we may have felt during this journey. It’s just frustrating and isolating. Local support is so difficult to come by,and even if you do find it, you have to hope meetings don’t fall on days when your child is in therapy.
Sadly, I could have written any of these because they all feel true.
Loved this ❤ It feels good to know that alot of these parents feel Exactly how I feel have felt at times. Thank you for sharing Kate ?☺
This is so much of things I feel. Thankfully I have a husband who is with me 100%. But there are days I don’t feel like I’m doing enough or that I am the mother my kids needs/deserves. And then the possibility that both my kids our autistic is just to much sometimes. But I love my kids, hate autism but will never stop fighting.
My 2 year old son is on a wait list to be diagnosed. The older he gets the less “everyone developed at different times” comments. I still hear alot “enjoy the silence while you can once he starts he won’t stop” and its like a knife to the chest every single time. My son can say some things but What I wouldn’t give to hear my son ask for a drink instead of bouncing and screaming until I figure it out. Or how about to hear my son say I love you, that one is heart breaking.
“I’m tired of all the damn therapy. I don’t know if it’s working. I think we should give up but society won’t allow it. So, we keep doing it. And there is never a break.”
This is how I feel about all of his services. All these bullshit services he goes to-special ed, social whatever it’s called, OT, speech therapy, regular therapy and I feel like none of it has helped. He needs me more than anything but I work full time. He is perfect for me. I bring him to the ground when he feels flighty. But I can’t be there when he needs me the most apparently. I can’t sit in class with him when his anxiety is through the roof. I can’t go to his lunch room when his anxiety is stalling him……
I am a Granny to the sweetest Angelique by I know. I keep him lots. I sympathise with this Mother and her feelings I know my daughter goes through all of this. I too feel it. I worry who’s gona keep my baby when I’m gone. I watch him when his Dads got him and has to work. He’s so prescious to me. The thought of anyone having him other than me and his mother I cringe. This really hits home. I pray for strength and courage for every parent that goes through these emotions. As well as any other. I love you my Ponkin’ Malachi Ray. And my beautiful Daughter Chylah Rae.??
I didn’t see the darkest thought I have had.
“One of the only reasons I don’t commit suicide is because I’m afraid of leaving him all alone. I’m the only one who is able to endure this with him. I don’t want anyone to hurt him.”
P-You aren’t alone in that thought. Oh goodness no you are not the only one and either am I apparently. My son is my shadow, I am basically his everything. I am the reason he tries so damn hard in school, I am who he thinks about all day (His teachers tell me and he has OCD also so he is basically obsessed with me), I am the only one he will listen to when he needs to be calmed. I am the only one who can even calm him. I am the only one who will listen to his million questions and repetitive questions if not answered thoroughly enough. I am the only one who doesn’t get annoyed with him (but let’s be honest, I do get annoyed I just hide it away). I am the only one who will do things with him because others get annoyed with him. If there was no me, who would be there for him? His dad tries but just doesn’t click with him like I do.
I know that feeling… You’re not alone
I understand. I think this EXACT thought at least once a week. But it never really leaves my mind.
That’s mine too. Exactly.
I don’t know what I was thinking. I didn’t want another child, I just wanted my son to be little again, he was already 12. He was perfect. My second husband says I love my son (his stepson) more than our adopted daughter and he resents me for that. He doesn’t take the physical abuse and violence that I do every day. I can’t go anywhere, I can’t take her anywhere, I’m a prisoner in my own home with a bipolar, high functioning, ADHD, fetal alcohol, sensory processing disorder, below average IQ adopted daughter who has been kicked out of three daycares. I had to quit my job. I despise the person I am now because of her. This broken mama should have just waited for grandchildren instead of adopting.
Wow. This is such a powerful read. I’m so grateful this is out there, because these thoughts are so lonely and isolating when kept silent. Reading this was very freeing. Thank you.
This article spoke to me like nothing else has before. It’s nice to know you are not alone especially when we live much of our lives feeling this way. The isolation by itself is enough to make the even the best of us go insane. I wish I could hug every last one of you.
thank you for sharing this. thank you to the parents courageous enough to share their true perspectives. i feel supported for the first time in a long time…
I so needed to read this today! Thank you!!!!!
I’ve just come across this. After the day I’ve had I needed this. I’ve sat and wrote something for one of my local groups. I read it to my partner only to be made to feel how I felt before I read this by my partner.
Thank you for the short time it made me feel normal again.
This is my darkest secret: “If I was given the choice to undo my pregnancy I would, instantly, without batting an eye, no second thoughts, no regret, no remorse.”
Hello,
Thanks for your transparency. I just wanted to hand out some encouragement. I am the step-dad of a 14-year-old autistic boy (the only dad’s he’s ever known). I met him when he was 5 and all the doctors he’s ever seen say that he is one of the most severe cases they’ve seen. I too struggle with grieving the normal child and I too decided to not have anymore children because both of my wife’s children have autism. It can be crushing at times. But, my love for their mother and them keeps me going. Over time, I’ve grown such a deep love for our sons despite their issues. This is a miracle because there were times I couldn’t imagine this ever happening.
God bless!
Thank you for your honesty and for the comments. I’ve felt them all.
Thank you so much for being brave enough to share this. It’s one of the most confusing things about having a child with special needs. I have felt all of these things at one time or other and I thought I was a monster. I was ashamed of how I felt as my son can’t help having severe autism.
However I could never voice those opinions to anyone even my friends who have kids with special needs. We all go round pretending that life is fine and our kids are making great progress but I guarantee you that if they could turn back time many would not have had those kids if they had known what their lives would be like.
It suits everyone else for us to keep a lid on these feelings because society and the government don’t want to know. Keep them at home no matter what the cost to your family, mental health and life. Because a child with a severe disability takes over your whole life and there’s nothing left for relationships work or social life.
Early intervention and all these therapies are flouted as miracle cures but they haven’t helped my son much. They just increase the guilt that you’re just not doing them right or enough. Even the small advances my son has made through various therapies has taken up so much time and effort from me that it’s a hollow victory.
Reading this you would think I didn’t love my son. I do so much it hurts and pains me every moment of every day that he has this condition. He will never be independent, have friends or have a meaningful life. He will never thank us for the blood, sweat and tears we’ve given. He will never be able to contribute to society in a meaningful way.
Anyone who feels that having a child with special needs is a blessing is lying to themselves or has never had to live with a severe disability.
Lying to ourselves and everyone else only makes it all the more unbearable.
THANK YOU, THANK YOU, THANK YOU. I feel understood. I printed this and put it on my bulletin board at work.
I can relate to all of this I hate my life
Thank you so much for that. I am a single mother to an autistic 3 year old child and I feel like a bad mom cause it’s so hard and I am so tired..I was crying silently in my room for a few minutes, holidays are so hard. And while I googled stuff to try to calm down I ran into this and felt a bit less alone. I really have absolutely no one, no family or friends with kids around. No experience. It’s the most difficult thing I’ve ever dealt with..
This hit home for me tonight. I came across this blog because after parenting a special needs child for 10 years now, I had a break down. I love my little girl but I hate the holoprosencephaly, the cerebral palsy, & the diabetes. I find myself getting quick tempered with her often for things I know she can not help. I find myself getting angry because it’s one more therapy appointment we have to go to, one more doctors appointment we have to be at. I get angry when I see other kids treat her as a social outcast but yet sometimes she angers me with her actions that I know she can’t help. I have another child whom is younger & perfectly healthy, & I am ashamed but must admit, I pay more attention to her then I do my oldest. I prayed for my oldest daughter when I was pregnant with her I knew it wasn’t going to be easy. I thought I was ready that I could handle it. But honestly I just want to run & hide. I am ashamed of myself for having these feelings. I want so much for my girl but deep down inside I know some things will never be. I have no one to confide in. My family & husband’s family do not understand. I despise my friends and family some times because they have perfect healthy kids. This blog litterly speaks volumes b for how I feel. I just wish so badly I had a friend who could understand. Everyone tells me your so strong I don’t know how you do it but reality is I’m completely and utterly broken inside.
Thank You for sharing I have had many of these thought. We are in the workup for diagnosis for my 18 month old baby so this is fairly new for me. I feel so alone. I get so much anxiety when Im around other moms talking about all their kids new developments. I used to love babies but now I look at other babies and feel numb. There are so many feelings of grief, guilt, uncertainty, fear, jealousy, resentment, sadness and love.
Great post. It’s so hard. I’m a stepmom to a kid with severe autism and not sure I can do it sometimes – want to run away many times. My own infant died of unknown causes and I wonder all the time why him, when he received a clean bill of health. I look to my stepkid and wonder why did my son die and she suffers daily? I had to bury a child and the only comfort I have is knowing my baby never suffered. I would never have preferred the life my stepkid lives daily for my baby. And burying a child is a deep wound that lasts a lifetime.
Firstly, I love this blog. Cooper is beautiful and so are you!
Now for my awful but heartfelt confessions:
I used to be pro-life. Now I feel anger on a daily basis towards my former obgyn for not picking up the obvious signs when I was pregnant that something was wrong with her.
I also used to be a hypochondriac. Now every day I wish that something would happen to me and I wouldn’t have to live like this anymore.
I am jealous. Oh so very jealous towards the mothers of healthy girls that will get to help their daughter plan a wedding one day.
I sometimes consider divorce so I won’t have to be around her 24/7.
Most importantly, I’ve dedicated my life to taking care of her and she’s made so much progress as a result. I do have my days where I feel like superwoman for all I’ve done with her and I need to learn to savor them more.
Thank you. Thank you for your honesty. I’m in a similar situation with a now 23 year old with severe CP and a host of other special needs. The family on both sides has completely isolated us. My husband blames me for ruining our lives. I’m about to be 60. I have no idea what to do about a special needs trust because no one wants the responsibility. My husband threatens to leave if I get emotional. There is no talking, just head phones, blog s books on tape and then he goes to bed. I never sleep. I’m an anxious wreck. There’s no catching up on any front. I have no friends. I work 40 hours a week and then do all the house work, laundry repairs landscaping you name it. Sometimes i think I’m going to go crazy. My son makes those noises too. He’s lonely. He has no friends. My heart is broken for him but I can’t round my circles fast enough to figure out what to do for and with him. I sleep from 3;30 am to 7:30 am. That’s if I’m lucky. Thank you. Thanks again. I spent the last 5 hours crying. I googled why can’t I stop crying and this page came up. I’m sorry for everyone else’s problems and fears. I truly understand.
I feel sorry for you, even though I’m not a parent but I do have Aspergers. Plus my mum used to work with people with autism and my mother is an awesome person but she quit due to the fact the other employees treated my mum badly due to the fact my mum treats autistic people kindly while others are horrible to them. Never lose hope. You love your son all your heart, bless you and your son. Your husband needs to open his eyes.
If it makes any of you feel any better, I feel this way as an autism parent too sometimes – and I AM autistic.
For me and my wife (also autistic), its not so much the grief for the life we thought we’d have or our children would have, but the resentment of our families’ lack of understanding my family’s lack of support, and how they take their NT children (my sibilings, neices and nephews) for granted. And worry about their future. I wish our example was proof they’ll make it, but they have some problems we didn’t that makes me doubt how the’ll manage independently.
Hey I’m the only one commenting that has Aspergers Syndrome and I’m not a parent. This article can make me understand your point of view but here is my point of view. I felt like I’m curse with this disorder. Here are the reasons,
1. Having a small talk is hard, even I try, they don’t care and walk away. When I make friends, it doesn’t last long for either A. When they found out I have Aspergers, they bullied me, B. They move away from school, which they are the best people but the are gone, C. When I don’t know some social skills like when to stop talking or stay in topic, the friendship falls apart. I tried to be normal and sometimes act like I’m normal which is hard but I’m glad I succeed to not be notice minus the bullies.
2. My family relationship is bad, i mean bad. My dad gets mad at me all the time when I didn’t do anything wrong or made a mistake. It hurts my feeling, I feel like he has my disorder which is Aspergers but his is more of emotion issues while me is social skills. I wish dad understands me but he always say that I love you. My mum is the best. She is kind and caring, however she does get frustrated when I’m in a shutdown or mini explosion of mild meltdown. I don’t hit or scream but rather I shout and cry and say negative stuff about myself or someone who did something wrong. Sometimes I feel like she favours my older sister than me and my younger sister. My younger sister also has Aspergers but with ADHD but I have the worst relationship with her. She bosses me around, says bad stuff about me and hits me. She can talk and I can talk like normal people but she doesn’t know the right way to speak with right language. When we fight, she hits me and threatens me. I know my parents hate it cause I happens everyday and it drains their energy and I feel guilty everyday from her. Finally white my older sister, she is normal and she is awesome but when I found out she has a boyfriend I got a bit jealous but I was proud of her. Then I question myself, “Will I ever get a boyfriend despite I have mild autism?” Or, “Why do many girls or boys get love at high school but not me?” It come soften to the point I wish I have a boyfriend but my mum said patience my love. However I doubt it will happen to get a love for my life.
3. I get worried a lot. I worried about school grades I usually gets C to B but others get A which make me feel dumb. I have an IQ test done and I got 132 which is very good but I still feel dumb. Why is big smart important other than getting money when your older. I worried about my family member’s safety, I worried about my future and worried about my friendship if it falls apart. Anxiety is just as bad as Aspergers and these two don’t make a right for me and others.
4. I keep hearing stigma and horrible stuff towards me and others wiht Aspergers or autism. They say like they are brats or they need to be in a mental hospital. It gets me everytime and when I hear it from someone near me, I go at up to them and say, “How would you feel if you have autism and someone says that horrible stuff about you cause I bet you be upset?” When I say it they either A. Laughs and says I don’t care or B. They relays and feel guilty and they should feel ashame. Spreading bad words is like a plague of diseases spreading to everyone and believes it which is bad.
Those are my reason why having this condition for myself is bad. Note that it’s not a disease and you cannot catch it. It’s a mental, condition that effect the brain. There is no cure but the are treatemenfs but beware of treatments cause there are some theapries that can damage the kid with autism psychologically and they are ineffective treatment.
But at the end of the day they are some goods things about people with autism or Aspergers like most people are scienctist, the have strongest empathy despite some can’t feel it that easily, they are smart and creative, they have eye for detail and they can be a funny person. Never judge them before you get to know them. I hope most mums and dads reads this to understand well about our brain, especially me.
Have a good day and here is my tip, remember this motto, always say, “We need SUA cause I have or my kid has autism?” which SUA means Social, Understanding and Acceptance.
Bye from Kasey.
Sorry if I wrote too fats and made bad grammar in sorry but if you understand than thank you.
Hi Kasey,
would you be interested in doing any guest posting on my site? You are a wonderful write and I would love to share your work. Please let me know. Thank you! Kate
I would like too but if you like you can share my story cause my grammar is quite bad but you can spread if you like 🙂
Yes you can share my story but can you fix my grammar error please 🙂 You can also spread my motto of “We need SUA, cause I have autism or my kid has autism. It stands for Social, Understanding and Aceptance. Do let me know he you post my story to others ok bye.
Fast*
When i got married, i could not give birth, it has been 4 years now we are married no child, i was having marriage crisis as a result of this, my husband was thinking of divorcing me. i was tired and frustrated and i love my husband so much, what should i do was the question on my mind, i came across Fertility Cure Home , who i contacted and great healer prayed for me and help me with a herbal remedy which i apply. after which few months later i conceive my first baby, all my thanks to Fertility Cure Home, the great roots and herbs temple. If you out there need help to get pregnant, you should contact Fertility Cure Home through him via fertility cure@yahoo.com
Here are my confessions.
I love my mom more than anything, but I know she likes my sister more than me. People say that we just relate differently. I’ve heard the excuses. I know better. My sister is the stable one. Why wouldn’t Mom like her more?
When I hear these stories, sometimes I relate them to my mom. I do it nervously. On some level, I’m asking her if she resents me that much, if she’s thought about leaving or killing me. I’m pretty sure she knows and is annoyed that I keep asking her, but I can’t stop.
I don’t talk to my dad. We live in the same house, and we don’t speak except for when he shouts orders for me to pick up something. His only real emotion is anger, but mostly he’s just apathetic. My life is better since I’ve stopped talking to him. I resent him so much.
I really believe that I am burden. It’s not just something I’m saying to make you feel some way or other. I hear your stories and I believe them fully. I have to fight that belief every single day because otherwise, I’d commit suicide. I know it’s true that I’m a burden, but if I believe what’s true, then death becomes a moral imperative. So I have to lie to myself. I have to come up with reasons why I might deserve life. I have to rail against all of this truth. And in trying to deny this stuff, I became this angry, lonely person who probably would be better off dead. But I’m stubborn, too, and I’m scared of killing myself, so instead I stick around to make other people miserable.
Today was the first time I googled ” I hate Autism”. My boys are 18 and 16. One higher functioning, the other more severe. I am exhausted beyond belief. Every single one of those thoughts has been on my mind at one point except suicide and that one not because I wouldn’t trust my husband or anyone else to care for them properly once I am gone. My husband doesn’t want to deal with it and loves the fact that he is gone a lot for work. I resent him for it, I resent my kids for making things harder than they have to be. I resent being looked at and constantly having to explain that “Normal is overrated” with a phony smile. We have never been on vacation. I haven’t seen my family in 12 years, cause my kids couldn’t make a 14 hour flight. Autism robbed us of every bit of normal. And then I feel horrible cause we were blessed with amazing insurance, we were able to have me stay home with them to go to all the therapies and they have come so far.. How many people would KILL for that. And here I am complaining about yet another therapy….I feel like a damn freak sometimes when we are out and about. Having to explain their tics and behaviors. I just dont know how much longer I can do this. If anyone else tells me I m the strongest person they know, I FUCKING SCREAM.
My daughter is difficult, but most of the time she’s being happy and cute, and it’s hard to be mad at her for just being herself. As she’s gotten older and stronger, the meltdowns have also progressed… but as she’s grown, so have my coping mechanisms and patience. I actually have more resentment for my husband. Don’t get me wrong, he’s a great dad… but I feel like he thinks that he’s the only one who gets to have any respite. I work full time, and he stays home with her, but she goes to school, and he sits on the couch on his computer all day… then when I get a day off work, I have to cover for him, so he can disappear off on hikes and camping trips, and falling off the face of the planet for 15 to 20 hours at a time. No way of contacting him, no way of knowing he’s safe. He likes to wonder off the trails, so if he was ever in trouble, chances are, no one will be around to help. So far, he’s fallen through ice and almost drowned, and slipped while climbing a waterfall and fell a good 20ft and landed on rocks… and he has learned absolutely nothing from it. The worst part is, he is so delusional that he genuinely doesn’t recognize that he’s doing anything wrong, and is totally oblivious to the fact that he’s really hurting me.
I think his behavior, and need for special treatment, is way worse than than my daughter’s special needs… mainly because he’s making a conscious decision to hurt me, and my daughter can’t help it.
Reading this was so raw and real. I’m still in pain over the people with normal kids telling me, “a Special needs child…you’ve been blessed!” This fueled my anger. The only blessing is that it didn’t happen to them.
As I read through the list, I kept thinking, “yes! I have thought that… and that… and that….” I always wondered, if there is 1 in 48 (or whatever the statistic is these days), HOW DO I NOT KNOW MORE OF THESE MOMS? WHERE ARE THEY? To have someone to talk to, face to face, to share with…. to feel supported…. If we can’t have each other, face to face, though, I’m grateful for Kate and for bringing us together in this format. Even if it is typed words, that helps. I love you all. We are in this together. I have in-laws who still don’t get it. My mom sent me an article once on a family who’s daughter was autistic. That was 3 years ago. To this day she still refers to that article as the ONLY “research” she’s ever done on autism. An article she happened across. She never asks about my daughter… That’s the loneliness. I appreciate all of you.
This is something I’ve needed to read today after another morning of hell and refusing to go into school when I dropped my other 3 little
Ones off with no help from the head apart from take him home he’s ruining his education (no reply was given from me as I was to scared as to what was actually going to come out my mouth) sick of him been treated like this !
My wife and I have a daughter with severe epileptic encephalopathy – and it has been, to say the least, defeating. It drains an individual, it drains a marriage, and it drains a family. Anyone who says a special needs child is a blessing is a complete moron. So what is a healthy child? A blessing AND a miracle?? I actually want to punch those humans square in the teeth, and then ask them to spend the weekend tending to our daughter. My guess is their opinions would change within a few hours. Between the endless therapies that don’t seem to work, doctor visits that don’t yield positive results, and the endless additional medicine requirements … autonomy disappear into a black abyss – and the scariest part is knowing it’s never, ever coming back. Society says a parent is supposed to care for a child no matter what … and the good ones (like me and my wife) do. But that doesn’t mean we get any sense of satisfaction from it. It’s a f**king daily chore, and the chore pummels your soul. As parents, we connect with our children through things like hugs, smiles, laughs, etc. A severely disabled child offers you – the parent – none of that. Our daughter might smile or laugh once a month. She doesn’t extend her hands at us in need of a hug, she doesn’t make purposeful eye contact, she doesn’t speak – she can’t crawl or sit up … she exists. That’s it. And we’ve become her robots. But this is the reality. There is NO way to sugar coat severe disability. It begins the day the child is born, and you (the parent) spend every single day caring for the child in the moment, knowing the moment will last until you expire. I dare anyone to explain to me how my wife and I are supposed to find happiness in this. Happiness in watching children our daughter’s age walking, talking, meeting milestones, having fun … while our daughter whines on the floor unable to do anything BUT whine. How are we supposed to find happiness in knowing our daughter might not ever speak, or walk, or drive, or work, or find love … what kind of marriage is supposed to sustain a child that turns into an adult, but exists on the level of a child … needs to be bathed, fed, changed. This article is a “blessing” … because it reminds all of us who bury our true feelings that we’re not alone, and we’re not crazy. We get one life to live – and when your life spins around and you have to live 100 percent of it caring for someone else, it’s only natural to feel doomed. I’ve watched my wife face down on our bathroom floor crying to the point of hysterics, and she’s witnessed me so angry and stressed that she feared I’d have a stroke. That’s the daily routine of special needs. F**k anyone who wants to judge us parents for what we feel. Because until they’ve laced up their own boots and jumped into these trenches we’re in, they’ll never have the right to an objective opinion on the matter.
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I just stumbled across this. I have been in a dark, dark place lately & everything just seems to get worse everyday. The comment, “The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”couldn’t be more true right now for me.
My three are all special needs & all within a year of each other in age. They were adopted through foster care & couldn’t be more wanted in this house & are in all ways that matters, “ours.” That being said, I gave up my degrees, my career, & what feels like my life to stay at home with them & now I’m becoming resentful to everyone because NO ONE understands just how hard it all is. My husband is the only one who helps out & he is finally realizing after 10 years just how lucky he is that he gets to shower & use the bathroom alone & drive to work alone & he is finally kind of understanding that he just gets to be around normal adult conversation everyday & that does not happen at all here at home. It’s sad that Covid made that happen, but it did. & It made me so angry that parents who had neurotypical children were complaining that they were stuck inside with them & had to figure out what to do with/for them. Nope. You don’t get to do or say that until the park or the pool or the library & the “routine” that your kids are DEPENDENT upon gets taken away & they’re forced to stay inside. Thoughts of killing myself keep popping in my head, but I will never do anything because I could never leave them or abandon them like they already were by their birth parents & I could never leave my husband to deal with them alone. Some reason to stay “alive,” huh? Because that isn’t living to me. There’s no happiness anymore, especially when I cry everyday & my goal is just getting through the day without losing my voice or getting a migraine. This definitely wasn’t what I had in mind when I “dreamed” of becoming a mom & wonder how am I any better than what they had some days. The past few years have just been rough & I just need it to get a little better to keep a little hope, otherwise I’m afraid I’m not going to make it.
Thank you all for your comments.
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